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Thread: A question.

  1. #1
    Join Date
    Feb 2015
    Location
    Oz
    Posts
    615

    Default A question.

    I was diagnosed with RA in December last after first showing symptoms in July 2016. My GP at first thought it PMR and treated me accordingly with corticosteroids for a few months. That didn’t work so I was referred to a Rheumatologist who I finally got to see in December last. So from December I have been on MTX, sulfasalazine, hydroxychloroquine and prednisone trying to find something that would lessen the pain, stop the spread of the disease and allow some semblance of a normal life; ha, wouldn’t that be nice?

    In desperation I added alternative treatments to my mix of toxins: turmeric, MSM, fish oil, vitamins and minerals and a raft of other old wive’s remedies. I also tried deleting gluten, dairy, meat and processed foods, all to no avail. Turmeric and MSM seemed to help a little at first but now seem to have deserted this sinking ship. The side effects from the prescribed toxins are something to behold: moon face, nausea, constant rashes, urticaria, cuts that won’t heal, skin that tears like tissue paper at the slightest touch, bruising with the slightest of bumps, burning eyes, insomnia, skyrocketing BP which is now un-treatable and a few other side effects I can’t think of at the moment.

    When I first came down with this disease it affected mostly my forearms and on a couple of occasions the pain was so acute I had to attend emergency at my local hospital, at three in the morning of course, these things never happen during waking hours. Between July and December the disease spread to my wrists, ring finger and thumb on my left hand and right elbow. After starting on the raft of toxins the Rheumatologist prescribed the disease took off in earnest spreading to both elbows, shoulders, neck, back, a couple of toes on my left foot and now I find I have nodules in my lungs.

    Of course this disease is not complete without the necessary and never ending specialist and GP visits, lung function tests, TB tests, nerve conduction tests, CT scans, steroid injections and so many xrays I now glow in the dark. On the positive side my power bill is now a little less each month. Now if only my waterworks were up to scratch I could also save on water bills – for the garden you understand: of course you do!

    Interestingly, despite the lung nodules, when the lung specialist examined the lung function test report he was surprised at my lung capacity, said it was phenomenal. I put it down to a preference for swimming laps under rather than over water when I was so inclined – lot of good that has done me, shame I remembered to surface once in a while!

    We had booked a cruise across the top from Sydney to Perth a week or so before the emergence of the RA, after my visit to emergency I decided it prudent to cancel lest I have a re-occurrence. Of course insurance companies being what they are my claim was denied, they citing it as a pr-existing condition. Relying solely on the documents they relied upon to deny my claim I wrote up a lengthy appeal setting out a reasoned and logical argument and drawing their attention to event timelines and their wildly inaccurate and presumptuous assertions and posted it off. Having little confidence in a fair outcome I then readied an appeal for the Insurance Ombudsmen for what I assumed would be an automatic denial of my appeal from the insurance company. Lo and behold, I received a very curt, one line reply a couple of weeks later advising my appeal was successful and all monies had been refunded. Disappointing, because I enjoy writing so much. Still, we got our 6K refunded.

    I now await approval to start on biologics, my last hope for returning to some semblance of a reasonable life. At present I suffer chronic pain 24/7 in ring finger and thumb of left hand, both wrists, forearms, elbows, upper arms, shoulders, neck, back and two toes on the left foot. I’m constantly nauseated from the toxins I ingest and inject in an effort to control this insidious, pervading disease, unable to sleep, unable to use cutlery with my left hand, unable to lift anything without suffering excruciating pain in my wrists and elbows, my hands shake like leaves on a tree, I continually come down with urticaria and other rashes, I can no longer drive, cannot dress myself or tie shoelaces on a lot of days, cannot scratch the back of my head/neck, have great difficulty reaching my face to shave or brush my teeth, cannot walk through the shopping centre with my wife without developing a limp halfway and door knobs, cups of coffee and taps are now just painful frustrations.

    Whilst the MTX and hydroxychloroquine have no effect the prednisone does but does not kick in until early afternoon. This allows me a very narrow window of opportunity, with the aid of wrist splints and feet, to do a little light work in my shed. The wife, good sport that she is, helps out but has a very bad habit of complaining about the noise, the smells, the steel swarf that sticks to her shoes, the steel splinters in her fingers, the dirty hands and other nonsensical rubbish. She also says silly things like ‘yuk, erky perky, do I have to', and 'but It’s all dirty and greasy I don’t like it!’

    Now to the crux of my problem: All this is difficult to bear, but worst of all and most disconcertingly I can no longer pick my nose! As I said, my wife helps me with most things but refuses point blank to pick my nose. So my question is: is it a fair and reasonable request?

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  3. #2
    Join Date
    Nov 2013
    Location
    St Georges Basin NSW
    Posts
    8

    Default

    Our thoughts definitely go out to you on this. Makes one also realise that one's own troubles aren't that bad.
    Definitely keep up the humour. You're a woodworker, and they are inventive, surely you can design a neat nose picker. If you're a woodturner then you would find another use for a small gouge tool.
    Humour if part if your attitude will help, it does for me.

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